March 2009 Rads Group?

BooBee

Going in for simulation tomorrow.  I have a list of technicians to request and I'm quite happy about that.  I prefer to approach this with a sense of humor and a smile on my face.  This, however, can be difficult if surrounded by unsympathetic, sourpuss health care providers.

I've had a cold for the past two weeks now I have sharp pains in my outer chest wall radiating up to my neck.  I consulted Dr.Google but it wasn't until I read about Julie50's health issues that I recognized it might be pleurisy.  (fluid in the sack around the lungs.) I hope this doesn't delay rads if it is.  I want this to be over.  I feel for you Julie. This hurts.

I'm almost 3 weeks from last chemo and have some peach fuz but more bare spots than fuz.

Hugs to all.

towdoe

Torch song, Guess we are on the same schedule! I start today too. I have a 2 hr. drive one way! I am not looking forward to this. I have been feeling so good now that it is a little over a month since my last chemo.

I am disappointed that my hair is not growing faster. All I have is some white fuzz!

Soaplady, I too gained about 5 or 6 lbs. but like you said...it feels like 20! It is kinda depressing to find something to wear that is not too tight AND hides all the rad markings!

Mamie2

Britt, I have a similar course as you. I passed on chemo w/Oncotype of 22. I had a first simulation and two little tattoos last week. This morning the rad office called to tell me my insurance denied me IMRT and so they are planning standard conformal rads now... and hope to get me in for more pics tomorrow - and hopefully starting this week sometime. I am reading Anti Cancer A New Way of Life and the book is jawdroppingly informative. I am living w my 88 yr old parents so I have them to talk to about things - las week when i was at the rad office they gave me a cream i began to use to condition my breast and guess what - it has methylparaben and propylparaben in it!!!! I am ER+ and so that is not a good thing to put on my body. 

PHONE just rang- I have a trial run tomorrow at 7:15 am!! Rads starting on Wednes.!

Torch - how'd it go today? 

TorchSong

HI all! Towdoe, how did it go for you?

They just did xrays on me today. If I hadn't been aware this might happen, I would have been very upset. For some resaon, last night I got very anxious about rads. Don't ask me why. But it went fine, about ten minutes in the room with the techs. 

I'm all over the place on times--all earlier in the day, as I asked, but 9 tomorrow, 8:15 on Wednesday, 10:30 on Thursday, 7:30 on Firday...They've given me the first six appointments, and the receptionist said they try to give us the times about a week out so we can change things (either in our life or the appointment) if we need to. 

I have my non-synthetic bras--they're actually made of bamboo fibers! They feel very silky and soft but breathe like cotton. I like that... Difficult to find non-underwire bras, I have to say.

Well, off to spoil myself tonight--settling in on the couch with a new book. 

Hugs to all...

ptjen

Hi Buddy1:  

My surgeon and medical oncologist insisted that I did not need radiation. Which was initially fine since I didn't want it anyway. But as I researched chemo issues, I ran across articles that convinced me that I fell into a category that benefits from radiation (size of tumor, extensive lymphvascular invasion, tumor grade, etc.).So I had a consultation with a radiation oncologist and she highly recommended that I have radiation. That was confirmed by the second rad/onco I saw. The benefit was too high to pass up.

I've had a mastectomy, chemo and am starting letrozole (Femara), doing a clinical trial with bisphospates, changing my diet and losing weight. If radiation can lower my local recurrence risk (which it does), I'll take that one on too. Anyway, in hind sight I would have talked to a radiation oncologist much sooner. 

 I had my last TC chemo on 2/11, my simulation on 3/13 and start radiation on Friday 3/20 for six weeks. 

Mary22

Torchsong enjoy your book!!! My rads are all at 8 am every morning. The first 2 were at 4pm, then 8am. It has been going pretty good. Hope eveyone who starts rads this week has a good first.

Mary

jessee54

Martha, where did you get those bras? I need some new bras and I was just going to get sports bras like I always do, but it's hard to find them in my size.

Are the bamboo fiber bras very supportive? (I need lots of support!)

Jessee 

TorchSong

Jessee, I found them at Sears, believe it or not. They're called Bambu. Now, this is in Canada, so may not be in the US stores. They were $18 Canadian.

I haven't actually tried them on yet--I was just too tired by they time I got to Sears--so I don't know about the support. They're a crossover style cup. I'll let you know how they work for me tomorrow.

I've stopped wearing my sports bras--they're making my shoulders hurt for some reason. I think I hunch my shoulders against the racerback straps, and so they get stiff (my shoulders, not the straps, lol). 

Martha

BooBee

I've done absolutely no research on rads at all I'm so burned out by this whole thing.  Today was mapping not simulation.  I don't even care at this point.  I'm just going to do what I'm told, show up when they say to and lie still when I have to.  This is so unlike me.  I'm not depressed I'm just tired of it all.  I learn more here than I do from the Dr.s anyway.

It's nice to see such a big group.  Wish it was for a different reason. 

Love to all.

kristifromsandiego

Thank you for the info on the hair growth, I cannot wait till I get to see a few spuds growing on my head.  I have only been 3 weeks out so I guess I have to wait another 3 weeks.  I get mapped for rads tomorrow.  Kristi

Mamie2

hi ladies... has anyone heard about this cream...i've been researching what the best thing to use on my fair skin for radiation. Obviously I can't rely on my docs here...they gave me something called "Soothe&Cool Free Skin Cream with Aloe, Vit A,D&E. But the fine print says parabens.... No. no. no.... check this one out: http://www.eco-beauty.com/Propolis-Cream-18-oz_p_123.html and also try radiationcream.com. I'm gonna check out the nature store in the morning.

TorchSong

Renee, I've been the same way. With chemo, I read up on all the drugs, did some online reading, etc. With the rads, I'm interested in getting the creams or whatever I need, but ohterwise it's all so mysterious--who understands all that physics and what all those numbers mean?--and as you say, I'm so tired of all this, that I'm diong pretty much the same thing. It's more, "get me through this," than, "are they doing exactly the right thing, is the dosage right, etc." Also unlike me.

Hang in there...there is a glimmer of light at the end of the tunnel!

Hugs

Martha

CindaD

Goodmorning Ladies, I'm growing hair!  A friend gave me this tx pack of Nioxin shampoo, conditioner and a leave on foam and I think it's working! Yipeeeeeeeeeeee.  I went for a walk the other day in the park and got so hot I had to remove my hat!  So the whole world saw me bald, but the wind felt soooo good on my head that I just didn't care anymore.

This is week #2 of rads and my incision is becoming tender, no redness, it just hurts which is to be expected, but I don't like it!

Have a good day ladies, this is our last leg (if you don't count the meds) of the marathon.....the finish line is just up ahead!

Cinda

Mamie2

Torchsong and Renee, I felt the same way this morning and I thought of this group as I was lying on the table. I also thought of my international prayer circle that I am in... not a religious group, but a group of well meaning spiritual communion of positive encircling support. I then envision two of these beautiful goddesses that one of my prayer circle's team members sent me and I'd like to share them with you. She told me that she saw many (Lots) of goddesses were encircling me, but two of them wanted her to make themselves known to me...Kwan  Yin,(she who hears the prayers of the universe) and Kamrusepas (healer goddess of the Hittites). You can find them on www.thaliatook.com. Arm yourselves ladies, with visions of strength and power that lie within you. I will be sending you good thoughts.

Mamie2

Today I bought some pure shea butter lotion w/ tamanu oil by Mode de Vie; and some Ultimate Moist (unscented) body lotion which is just coconut fatty acid cream base w/ white camelia oil, sunflower oil, macadamia nut oil, citrus seed extract, Vit A, C and E.) I hope these will be ok. I returned the cream they gave me that had the parabens in it. The nurse then told me,"oh, yeah, you're not the only one who returned that cream." Wha???

SusieMTN

nelia48 Cora, I too have had a spike in blood pressure (just slightly elevated) which is not coming down.  My onc says he is not concerned.  So perhaps mine is mainly from going thru all that we go thru when you are diagnosed with BC.  Onc says that your body goes thru ALOT!! 

 mfgibby - Thanks for your input. My skin is already going crazy, I am sure due to not being on steriods, keeps the allergy thing away.

 jessee54 - Oh, like the Organic Olive Oil thing, I will order some and maybe alternate between the two.  Already have my Organic Aloe Jelly.  I think Organic is a good thing too!

Off to Radiation, hope everyone is doing well!

TorchSong

Renee, the Bambou bra is very comfortable. I don't know about support. I'm a 38C and it's fine for me. I'm thinking I'll go pick up a few more, in fact, and toss the underwires for good (which I was not very fond of anyway).

My rads appointments are all over the map...8:15, 10:30, 7:30... I had wanted them all at the same time. Am I being controlling or obsessive? lol

Susie, I love your sig...

1 down, 34 to go!

Martha

kristifromsandiego

Martha,

 It looks like I am going to break down and buy one of those bras.  The one's I have hurt a bit around my rib cage.  Can you send me the link where you got them.  

I got mapped today, even got a tattoo....don't tell my daughter I have told her that she cannot get one.  She is only 17.  Good new about the purabens, I will check my lotions to find out if they have any.  My doctor said she would give me a list of prescriptions I could fill if I wanted to when the time comes for skin problems.  I am only doing 28 treatments so time will tell.  Thank's again  Kristi

TorchSong

Kristi, I picked up the bra at a Sears here in Canada...it's apparently a Canadian brand. Here's the link, though--http://www.nowthatslingerie.com

Under "Search by brand" choose ::Elita" and then it's under their bra collection. They also have cotton ones and even bamboo camisoles.

It's felt great all day--I don't even notice I have it on, which tells me it fits well! I am sold!

Mary22

I have been wearing a tank top style bra, because it did not rub on my two incisions. It also helps with my tummy, so I feel a little better about myself.

nelia48

I've been going braless!!!!!  I never thought after all these years (I'm 60) that I would be more comfortable without a bra --- especially after the mastectomy.  But here I am, shameless.  I'm about ready to go without my hats, too.  My hair is about 1/4 inch long now, and I'm really tired of that hat thing.    I have been wearing the men's sleeveless cotton teeshirts, which keep me from jiggling a lot.  I just havent been able to go for a bra yet and to the mastectomy store.  I couldn't get a reconstruction job done as they had to take too much out --- it was even questionable at first if they would be able to close the surgical site without plastic surgery because the tumor had been so large.  But right now, the site is still so numb and sore that the thought of a bra just sets my teeth on edge.  So braless it is!

I'm lucky that all my rads appointments are at the same time each day.  I'd never remember when I was supposed to go if it weren't.  I think I developed chemo brain and can't remember a thing anymore.

Cora

NancySchoen

Martha.... Did you ask the radiation people what their thoughts are on why the appointments are all at different times. Mine are all at 10 am which is good as then I have a routine which makes it easier for me. I wonder if any one has suggested to them that they try the system of each patient having the same set time. I do not think it is controlling or obsessive. This is hard enough just to go every day with out having to rearrange each day around the rads.

Cora... I am with you I never went braless but alas here I am at 57 just wearing a cotton tee shirt or a comfy camisiole. I do have some wonderful bras that I got from JCPenneys that are all cotton with no latex, or wires and they are so comfortable when I do have to wear a bra that it is not bad. I bought them larger then I normally would have so they are comfy.

Karen... How are you doing? I am on my way out the door for number 17, half way there today!!!!!

I am feeling pretty good. Although yesterday I over did it as it was so nice out I thought I could go out and sweep the deck and pick up some small branches that had blown down in the winter. So  am paying the price this am as I am already fatigues this morning. Usually it does not happen until later in the day. I am only just now getting very red. So hopefully this will hold out until the end.

Hope we all have a good day today. Nancy

TorchSong

Nancy--I think it is because it is just too difficult to coordinate--people come and go at different schedules (some need 30 doses, some 45, or whatever), they need to be flexible incase someone needs to change a date or time (frex, they reschedule you on days when you have an appointment with a doc, so you don't have to come back twice), and they are also in the process of getting a new machine, which means downtime for that treatment room and more of a workload on the other machines. I do get them all in the morning, because of my work schedule, and that's a huge help. I would prefer them all at the same time, but they do their best! And I do have a booklet with my appointment times written down--the receptionist checks off each day and give me the time for the one a week out.

I've been using the emu oil twice a day--after the treatment and at bedtime. Also, finally getting into the routine for the rads--how to put the gown on, getting situated on thetable, etc. I've got a book (bio of FDR) that is my rads reading--I just leave it in the car with my appointments booklet in it (after i transfer the appointments to my DayTimer) so I know where it is and don't have to think about ti. The less i have to remember these days the better lol

Hugs to all-

Martha

NancySchoen

Martha... Sounds like you have a good system worked out. I feel the same way about getting situated for the treatments. I find if I get in a certain position it is "almost" comfortable. So I do the same thing with the gown and positioning before they start making the final changes.

I agree the less I have to remember the better. I really think once you hear the words "you have breast cancer" our minds shut down. I find myself trying to say the simplest things and just not remembering what I was going to say.

Some of my girl friends have been asking what they can do to help me. I have said I did not need anything. But this week I said they could take turns driving me to Rads. Then we go to a store for a little bit and have lunch. This has really lifted my spirits.  I did not realize how much I have missed spending this kind of time with my friends. I have been in the house almost exclusively since mid December except for surgeries and doctor appts as I had been so sick, as I know many of you can relate to, plus being very depressed.

Nancy

Anonymous

Maria,  I also skipped chemo with Oncotype=13.  Like you had lumpectomy and SNB.  My simulation is scheduled for next week 3/23 with Cat Scan on 3/25 and something called 21X appt next Friday 3/27.  I guess my rads will start right after that.

Anonymous

Oh, and I already started on Arimidex - 2 weeks now with no SE's yet.

Anonymous

Or maybe SE of forgetfulness has hit (lol).  I'm scheduled for 33 doses; 5X/week with last 8 being boosts.

nelia48

Nancy, it's great that you have friends like that who are willing to go with you and go out afterwards.  My sister and I have been doing that, and it's just great to be away from it all for a little while.  During chemo and after surgery, I felt so "housebound."  I felt like roadkill during chemo and couldn't do anything and didn't feel like seeing anyone, either.  So now it's really great to get out a little.  I'm so anxious for this to be all over with.  I've been at it since July, and I've had enough already!   Cora

dianef

I have completed 13 tx...20more to go!!!!  I have started to feel the fatigue so I am trying to get a good night sleep.  Has anyone experience any shortness of breath while  on treatment?  I am starting to, but my onc says it is a little early.

Best to all

Diane

bluedasher

I have completed 1 treatment. It's kind of weird. The two techs get me lined up. I lie there and the machine moves into position, emits various clicks and whirs, then moves into another position, makes a bit more noise and it's done.